What I Didn't Know Before I Met My Daughter With Spina Bifida


I read an article recently (My Child’s Disability is Not a Tragedy,) which threw me back to my daughter’s prenatal diagnosis of spina bifida when I was 20 weeks pregnant.

Here’s what I remembered: at that moment, I did believe it was a tragedy. It felt like a tragedy. It hurt. It was terrifying. I didn’t know if I could do it. I knew I still wanted her, but I was scared out of my mind. I was sad and blamed myself. I was hyper-aware of having a healthy pregnancy, took my vitamins, and followed all the rules, but how could it be anyone’s fault but mine? She was inside of me.

Lily playing ukulele.
Lily playing ukulele.

The 18 weeks between diagnosis and her being born were hard. Really hard. I only knew what I’d read, researched, and what doctors had told me. I could tell you the percentage likelihood she would need a shunt to treat hydrocephalus, and how many millimeters the ventricles in her brain were on ultrasound. I knew she had the lemon and banana signs to signify a Chiari II malformation, but that her cerebellum wasn’t herniated into her spinal column badly enough to qualify for prenatal surgery. I could rattle off which muscles in the body were impacted by a lumbar level lesion. I read medical studies and devoured data like a ravenous beast, obsessed about her measurements on every growth ultrasound. I met the doctors and surgeons who would take care of her, and knew step by step what would happen the day she was born, because I went to every appointment with a notebook and list of questions.

I knew all this and more, but I didn’t know her.

There is a huge difference between knowing information about a disability and knowing people with a disability.

I know her now, and she is definitely not a tragedy. She is spunky and full of life, and more resilient than anyone I’ve ever met.

Lily with her family.
Lily with her family.

She sings.
She dances.
She is hysterically funny.
She overflows with determination.
So many people have told me she inspires them personally.

People tell you that children with special needs are a gift. Before I had one, I didn’t understand how that could be true. Now, I get it. She has to work super hard for an incredibly long time to master skills that other kids figure out in a week, but she does it with the happiest attitude you could imagine. Her spirit radiates, and you can’t help but love her and be happy she is in your life.

When she was still an infant, I had a few experiences like the woman in the article. I had people tell me, with mournful expressions, how sad it was that she has this “thing” wrong with her. A few times, I had friends cry when I told them Lily was born with spina bifida. It felt odd to comfort these people, and to assure them that my girl is wonderful exactly as she is.

When these events happened, I was past the sadness. I knew her, and she was so far from a tragedy that it caught me off guard when people reacted this way. However, all they had was misinformation, and a false image in their mind of what it means to have a disability.

My challenge to you is to take time to get to know someone, or multiple someones with a disability. Grab an eraser and scrub out any images you have in your mind regarding what it means to be disabled. Open yourself up to fill that space with your experience.

Don’t be scared. Be excited. Your life will be richer, and you’ll learn a ton.

This article was originally published on AbilityHacker.com.

The Mighty is asking the following: What’s one thing you thought on the day of your or a loved one’s diagnosis that you later completely changed your mind about? Check out our Submit a Story page for more about our submission guidelines.

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